What's in a name

Yesterday I spent an hour with the professor in charge of Carol's case. I learned that no progress had been made in identifying her illness but that it is no longer appropriate to call it dementia. Rather its name is neuro-degeneration.  For Carol its stages cannot be charted, though the fact that she has not eaten for 9 days since entering the latest ward is a grim sign.  They insist that a further MRI and lumbar puncture are necessary in the next few days but admit that they may still be unable to pin-point the particular disease. As you can imagine, I feel conflicted on all this. 

However, there are highs as well as lows.  I sadly didn't witness it but the highpoint today occurred when I was collecting my jet-lagged son after lunch. Going up the stairs to her ward we met two friends from the church descending with smiles. They had just visited Carol and found her responsive in ways that (I think) surprised them (and me). Apparently, she remembered names and was 'on form'.  As they put it: 'These are moments when we see 'the old Carol'.  One of the oddities of her disease are these times of connection when confusion and tiredness are rolled back. I still chuckle with her comment to me a few days ago when a meal was served in her previous ward. It included a piece of processed meat which seemed  too good to waste (and I was hungry). I began to eat it and Carol suddenly chirped up: 'You have a brilliant gift for eating disgusting food!' 

However, bringing us down-to-earth, when we entered the ward after our church friends we found her in deep sleep showing no responsiveness as we held her hand and tried conversation, which went nowhere for the next four hours. These lows are very dispiriting but we remain so grateful for the love and prayers of so many friends. We keep trusting.